I realize it has been a while but I have decided to do this again. However, I have decided not to pressure myself into doing it every day. Well, this seemed to be my problem before. I felt if I couldn’t do it every day, then I needed to stop. However, Ataxia isn’t that way. Some days aren’t the greatest and you have to just go with it.
The word I’ve chosen for today is ‘prelapsarian’ which refers to the quality of innocence and being carefree.
I wore my old conference shirt to volunteer this morning and was reminded of a very special time. It’s hard to believe that it’s been so long, but it’s been 10 years already. In 2006, the then “New England Support Group” hosted the National Ataxia Foundation’s annual membership meeting.
There was such a camaraderie amongst this group that I just can’t describe. We all worked together to pull off a wonderful weekend. While engaged in planning for this event it was like we weren’t disabled. We were on fire! Now there is dancing at every annual conference but ours was the first!
But things change. This group has changed. Some have gone in different directions. Sadly, some have passed away. But of those still around we share a common bond. We are all dealing with or have dealt with a similar disability. It is so nice to be around people that truly UNDERSTAND!
This is another word for the state of being tired.
Lack of energy seems to be very common among those with Ataxia. For me anyways, the supplement CoQ10 is vital. I take 1200 mg per day. Unfortunately, this over-the-counter supplement, recommended by most neurologists, is very expensive. I have found this site to be my best option: http://m.puritan.com/co-q-10-055/q-sorb-coq-10-600-mg-030454 ; through them I will buy 5 bottles of 600 mg for $79.98 (Buy 2 Get 3 Free). This will last me just over 2 months.
My town, Andover,MA, has an annual Thanksgiving morning tradition called the Feaster 5. In it, a person can run/walk the 5K or 5 mile race. The event also includes a kids’ K which includes races around the track for the younger children.
OK, even “Susie Sunshine” (as I have been called in the past) has her bad days. Sometimes I just want to yell, “Uncle!” I’m done. I’m beaten. Stop! Continue reading
Today’s word is triskaidekaphobia. Another amusing sounding word. It refers to the fear of the number 13. I guess GORZELA ATAXIA is pretty scary, huh?
I read this article today and thought you might be interested…
No, a Bad Attitude Is Not the ‘Only’ Disability
Remembering the work of disability rights activist Stella Young.
This blog has been set up to fill that gap in support that we all need. The last Boston area meeting was November 1st and it’s next meeting is February 7th. The NH and RI groups meet this Saturday. However, many people with Ataxia can not make it to these meetings. Therefore, this blog has been set up to serve as a way for all our NE members to keep in touch in between the times they can not meet face-to-face. So let’s share with each other those ideas we think others might benefit from, those questions we all have…Let’s not let anyone feel they’re alone in this. I know, for myself, that my biggest benefit from support groups has been learning the fact that “I am not the only one!”